PITTSBURG — Seven-year-old Aven Palmer loves dinosaurs and ballet and is full of energy. “You would never think that she was a sick child ever,” Midwest Regional Ballet Director Kaye Lewis said.
Aven is one of Lewis’s students and she has a condition called cystic fibrosis, a rare genetic disorder “that causes persistent lung infections and limits the ability to breathe over time,” according to the Cystic Fibrosis Foundation. CF causes an increase of mucus which is thick and sticky.
Dancing helps keep Aven’s lungs strong.
“We want to keep the lungs as strong as possible so exercise is encouraged and she’s still young so we try to be proactive,” said her mother Autumn Lawerence-Palmer, of Carthage. “Even the adults try to do what they can as far as running, exercising and weight lifting because you want to keep your lungs as strong as possible so that way they can fight off those infections better.”
Having CF requires a lot of maintenance, Aven takes 46 pills a day and must have daily breathing treatments. She also has a special vest which helps shake loose the mucus in her lungs. It’s the maintenance which helps prevent some of the symptoms of CF, her mother said.
Although the condition is rare, there are many others in the area who have CF, Autumn Palmer said. A few of them are going to be at an upcoming fundraising variety show called “Just Breathe,” hosted by MRB.
“I feel like I’m blessed to do what I love, to live in a community of artists that support each other and I’m blessed to have the dancers that have come through my path,” Lewis said. “And with all of that I feel like we have to bless our community with our craft and utilize it to help each other.”
Lewis came to Aven’s mother about a year ago and informed her that she wanted to do something for the Cystic Fibrosis Foundation.
“I want to give a shout out to Kaye Lewis, if anybody has ever been to one of her productions or even just had the honor to work with her, she is very talented but she also has a very giving and kind heart,” Palmer said. “I think when I say that I’m thankful I speak for so many families, because it is truly amazing that the advances that they’ve made — even in the last ten years — with the new drugs is solely because of events like this.”
According to Palmer, there’s no government funding for CF research and big pharmaceutical companies are not contributing to research, so the Cystic Fibrosis Foundation purchased a biotechnology company called Vertex Pharmaceuticals, she said.
“I get emotional thinking about it, although I hate that our daughter has CF I am just so happy that she was born in this day in age,” she said. “If she was born back in the ‘50s she probably wouldn’t have lived to see kindergarten. She wouldn’t be here today.
“It is truly a labor of love, they do that through a simple donation and it really does go to a good cause.
“The truth is in the life expectancy now and the life CF patients are living. We still have a lot to do because there’s no cure and we are still losing a lot of individuals at a very young age.”
The “Just Breathe” will be at 7 p.m. on Saturday at Pittsburg Memorial Auditorium. Tickets cost $10 for general admission and are only sold at the door.
Local dancers, vocalists and musicians will perform. People can learn more about the performers on the show’s Facebook event page.
At the end of the show, Aven and her sisters will do a special performance together.
— Stephanie Potter is a staff writer at the Morning Sun. She can be emailed at firstname.lastname@example.org or follow her on Twitter @PittStephP and Instagram @stephanie_morningsun.